Testing Inclusivity and Innovation Benefits All
October 14, 2022
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| Photo via Getty Images |
AUCD's network of Intellectual and Developmental Disability Research Centers (IDDRCs) consists of 16 Centers. Fifteen Centers currently receive funding from the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD). IDDRCs contribute to the development and implementation of evidence-based practices by evaluating the effectiveness of biological, biochemical, and behavioral interventions; developing assistive technologies; and advancing prenatal diagnosis and newborn screening.
When the COVID-19 pandemic struck in the spring of 2020, students and staff at schools that serve children with intellectual and developmental disabilities (IDD) were left stranded. These students and staff faced unique circumstances because they could not always follow the CDC guidance on masking, testing, and social distancing due to the nature of these children’s conditions. With more than 10% of all public-school students having disabilities, how could we keep these students safe when returning to school in the fall of 2020?
Close contact is in the nature of the specialized care that staff provides to students with IDD, and this presented major safety concerns when returning to school. Our research team wanted to find a way to help these students and staff safely return to schools while maintaining the delivery of care that is customary for students with IDD. With masking and social distancing practices being difficult to enforce in this school setting, we believed that increased testing would help control the spread of COVID-19.
Our decision to implement surveillance testing presented challenges, as testing methods such as nasopharyngeal swabs can be greatly disruptive for these students. We wanted to use a test that was both less invasive and highly accurate.
With the help of the Washington University in St. Louis McDonnell Genome Institute in partnership with the bio-tech company Fluidigm, we were able to implement saliva-based PCR COVID-19 surveillance tests. The non-invasive nature of saliva collection proved to be a minimally disruptive and effective way of testing students with IDD.
From November 2020 to June 2022, six schools in the Special School District of St. Louis County that educate children with IDD joined our study for weekly COVID-19 surveillance testing. These schools employ approximately 600 teachers, staff, and administrators who educate 716 students.
While the results of this study were very informative, it was the feedback that we received from staff, students, and their families that helped us to understand the magnitude of the positive impact this testing had in these schools.
Our initial goal in using saliva-based PCR testing was to benefit the students with IDD, but we found that teachers, staff, and administrators greatly benefited as well. We enrolled 114 students, and astonishingly enrolled 547 staff, resulting in an enrollment rate of 15.9% and 91.2% respectively. During the course of our study, we completed a total of 19,521 tests, of which 225 yielded a positive result.
While the results of this study were very informative, it was the feedback that we received from staff, students, and their families that helped us to understand the magnitude of the positive impact this testing had in these schools. Through feedback from surveys, school-board meetings, and daily information from our test collection sites, we found that this testing had far greater benefits for these school communities than we could have ever predicted. Families reported that they felt confident in their child’s safety in school and staff felt more comfortable interacting with students. In a much larger sense, these school communities felt that they were doing their part in keeping the schools and the community safe and informed during the pandemic.
As we navigate the current pandemic and prepare for future pandemics, we strongly suggest paying attention to and giving high priority to the needs of individuals with disabilities. When we prioritize these individuals and adopt innovative practices to ensure their safety during a pandemic, testing models become more inclusive and are more likely to benefit all.
